Shadows

An old friend posted on a link that I shared over Facebook last night. The link spoke of Synesthesia, a phenomenon that I have been closely observing with Sammie since he was an infant. Synesthetes have a fascinating sensory perception condition in which the stimulation of one sense triggers unconscious and involuntary reactions in the other sense. So some synesthetes "hear" or "taste" colour, "see" music, and "taste" light.  Recent studies indicate that Autistics are 30% more likely to experience synesthesia than neurotypical people, and it is definitely something I have picked up on with Sammie since, as a very young child, he appeared to try to "touch" light and "sounds" and still covers his eyes and ears when there is a smell in the room he doesn't like.

My friend commented on his own experiences of heightened/stimulated perceptions, and I found myself so curious to ask him more about it. I was just about to send him a private message, when I stopped, fingers still set to type.

Where does one even begin?

You see, where once upon a time we were actually quite close, my friend and I haven't seen each other in around 8 years.  Almost 3000 days....

I've followed him- from the comfortable distance of Facebook- as he has explored the world, fallen in love, become a father....

I've followed and read with intent curiosity his shares about politics, food, and life in general...

I've laughed at some of the comments which remind me of why we were friends in the first place...

I've smiled, sensing very much that he is happy and exactly where the Universe wants him to be...

But it has been years since I have said 'hello'. So long, actually, that I'm not even sure where to start.

You see, I'm not entirely sure the person he was once friends with still exists.

While I do know that most people grow, change and evolve over the course of their young adult lives, I'm not entirely convinced that most do it with such a strong-handed division between who they were (and thought they would be) and who they are (and have become).

I can trace back, to the day, the moment that my life got split down the middle: Zita of Then Vs. Zita of Now.

February 5th, 2010. I was 19 weeks pregnant with Sammie and received a call at work from my doctors office. He was just about to leave for Mexico but "needed to talk to me before he left" because he didn't want another doctor to have to give me the news.  The ultrasound had come back with signs of severe abnormalities. The child that we had coveted for so long, that we had risk so much for...the baby was sick. 

The whole conversation seemed to take place in a blur, but I remember every word. 

"You're going to have to decide what you want to do. You only have a few weeks if you want to terminate. We can wait and see what happens, but that will make it harder for you to act if you decide that you don't want to go through with this. What you need to know is this: the baby will probably not survive the pregnancy, and if it does, it will likely have a limited quality of life. And you are also at risk- this could be very dangerous for you."

My heart stopped beating. And for that moment in time, all I could hear was the blood pulsing through my head....and something faint behind it. Another heart maybe? My baby's heart. 

There was nothing to think about, nothing to consider. 

I knew that I would risk my life for this baby. That I was prepared to die so that he might live. 

I went home and talked to Jason, already knowing he would agree. We would fight for our child. We were his parents. It was our job to keep him safe. 

We named him that night, knowing that we would want a name in case we had to bury him prematurely, inspired by the book of Samuel, verse 27: "For this boy I prayed, and the Lord has given me my petition which I asked of him."

On that cold day, almost four years ago, something shifted inside me and I would never quite be the same again. I realized, in a real and tangible way, that there was nothing- NOTHING- I was not prepared to do for my child, and with that realization, I walked away from the selfish young adult I had been and entered a whole new world of understanding that self-actualization only comes when the self is no longer the principle focus.

Prior to that day, I had already been a friend, sister, daughter and wife. I had already loved people, many unconditionally, and had fought battles to protect them and our relationship.

But there is something slightly different between saying that you are prepared to die for someone, and actually signing a document stating that you would like another person to be saved before you are.

On that day, I knew that I would never be the same. That every hope and every dream I had would be placed on hold- possibly indefinitely- while we awaited the outcome of the pregnancy and birth.

The rest is history.

Since then, one day at a time, the person that I used to be slowly became replaced with the person I have become.

My perfect, immaculate parlour with baby blue furniture? Covered in raspberry finger prints.

My dreams of becoming a corporate lawyer? Replaced by working from home, usually during nap time.

My business suits and designer glasses? Replaced by yoga pants to make floor time more accessible.

My love of food, and obsession with restaurants? Replaced by a mostly pesticide-free, dye free, corn/soy/msg/gluten-free, casein/dairy-limited, modified Paleolithic Diet. (Yum!)

My ambitions for wealth? Replaced by hope for government supports for families with disabilities, and a sincere understanding of just how good we've "got it".

My son's Registered Education Savings Plan? Replaced by a Registered Disabilities Saving Plan.

My vision of a wet-bar in the basement? Transformed into a Snoezelen Room and Gross Motor therapy space.

My idea of a perfect Saturday night dinner? One where Sammie actually eats what's on his plate.

My dream Christmas gift? A maid service. Seriously. How awesome would that be?

My Friday mornings? Meetings and training seminars with Speech Therapists, Occupational Therapists,  Developmental Psychologists, and teachers.

My super huge, pillow top mattress? Not so huge now that I have another baby snuggled up beside me.

My days of wild-child style partying until 5 am? Ha ha. Last night, I was breastfeeding at 5 am. :P

My life? Absolutely perfect, and I wouldn't change a thing. 

But it isn't where I thought I would be, and I doubt it's where others would have predicted me to be either. Sometimes I look back and am amazed by just how far off my original path life has taken me.

And so, in moments like last night, I think back to the those friendships of the past and wonder- would they- could they- have changed with me? What would we say now if we were face to face? Would we have anything to talk about? Or would we have so much more to say now than we did before?

There are a handful of people who walked the last five years by our side. We've lost many friends, mostly due to the significant changes I have described above. Many people don't understand. Many people are scared of the life we are living. Special needs parenting is not for the faint of heart.  It is full-on, 24/7, intensive and unabashed adoration of another human being (and in our case two) with almost no respite and minimal support.

There is very little room for "you" in this world.

And the "you" that there is room for is a very different person than the one you knew before.

I didn't grow, or evolve,  or develop.

I changed. Black and white, from one day to the next, overnight.

Pre-Sam Zita is a distant memory. All that is left are the shadows of the life I thought I was meant for.

There is no regret or sadness, though there is sometimes a tugging nostalgia.

But I'll be honest with you, I like this "me" a lot more than I liked myself back then.

And I have a suspicion that, if ever we were to meet again, my friend would too.

Maybe that's why we were friends in the first place.

Out with the old

I have been cleaning out my storage room for 13 hours, practically straight. I am seeing double, my legs are throbbing and I can't feel my toes.

All of that to say: no post tonight.  :(

Cop Out Post

I am copping out tonight. I am supposed to be writing about being a team player...and I will. Tomorrow.
For tonight, let me sat this: Being a team player sometimes means knowing when to focus your energy on your team mates so that you all have something worth fighting for tomorrow. So tonight, I'm snuggling with the hubby, eating nachos and watching Survivor. The blog can wait. ;)

#33: Lessons from the playground. (Another spin on getting along).

(Please read the background to this post here: http://www.autismorsomethinglikeit.blogspot.ca/2013/11/writers-block-33-7-17-47.html)

Topic # 33: Lessons from the playground. Another spin on getting along.

He stares out the window with a depth and soulfulness that makes me wonder if he is actually taking in every shade of refracted light stemming from the droplets of condensation on the window. 

He is so still and so quiet. And yet so present and aware. 

We pull over to the side of the road, where the green grass exceeds the height of the cement marker used to instruct me on where to position my car. I pull him out. He looks down at the ground. I can almost hear his thoughts "Mom parked on the yellow line again. Doesn't she know she is supposed to park between the lines, not on them?"

From the distance, I hear the voices. Laughter, squeals, and screeches of delight. Someone shouts "No Fair!"  I hear an adult voice loudly drowning out the other sounds: "Tommy! Leave your brother alone!"

He doesn't raise his head, but cocks his ear as if to acknowledge that- yes- he hears them too. More than that, he hears the sound of the wind floating across the wings of the birds that have taken flight overhead.  He hears the buzzing of the bumblebee as it hover over its conquest, embracing into its bosom the sweet nectar of life. He hears the rabbit, perched merrily on top of a mound of dirt, gleefully gnawing on a blade of grass

"But- yes, mom- I also hear the voices. I know that they are there." 

I look at him, waiting for a cue. He does not ask to go back into the car. I can press him further.

"Sammie Baby, it's a beautiful day! We are at the park. Would you like to play here for a little while? I can push you on the swings if you'd like."

I pause, waiting for an answer that will not escape his lips. I watch his face and body closely, waiting for the slightest movement to betray his heart's desires. 

It takes him a moment to lift his eyes and take in his surroundings. 

Slowly, he looks around, examining the environment and assessing the situation. 

He glances at my eyes. 

Briefly, then its gone. 

That means yes.   

He lets me take his hand and smiles. He knows I've understood him. He likes that we just "get each other". I wonder if he knows how hard I work at it...

The park is overflowing with joyful faces, young and old. There are blankets laid out for picnics, and shoes casually discarded in the sand. The older boys and girls are taking turns leaping off the top of the slide, as their parents pretend not to notice and attempt to conceal their anxiety. 

He is thrilled. He loves people and activity. He loves to watch them play. He wants to play too. 

He doesn't know that he doesn't know how...

He races off, faster than I expected. I run after him, carefully craddling the baby's head so that she doesn't get hurt as I bound as quickly as I can after his nimble feet. 

He stops in front of a group of kids, probably two or three years older than he is. 

They stare at him. 

He is different. 

He stares at them. 

They are different. 

He doesn't care. He smiles. He laughs. He hums. He jumps. He flaps.

When we don't have any words, we have to show joy with our body. 

The children continue to stare. 

"What is he doing" they ask me. 

"He is saying Hello" I reply.

And then he starts to spin. 

I hold my breath. I am being watched. I know that my cover is blown. We've been exposed. The panic rises and, all of a sudden, I feel like I am fourteen years old again, terrified of being picked last for basketball. 

"Leave that little boy alone" A mom calls out, from a safe vantage point in the shade. 

And the world stops. 

...

He spins

...

I am frozen

...

He spins

...

They are staring

...

He spins. 

...

"Ha ha! He's getting so dizzy! I want to try! I can spin really fast too!!! Watch me!!!"

...

What?

...

And now there are two. And soon three. And then four. And they tumble to the ground in a heap of giggles, their heads reeling from the sensory overload. 

"Wow. He's a really a good spinner. He doesn't even fall down. Come on, let's go down the slide."

He stops, and watches them go. He is smiling when he looks up at me. He wants to go on the swings. It is must quieter there- no one else is around. 

We stay, swinging away, just the three of us for another hour and I watch as, one by one, the group starts to dwindle down to nothing. It must be dinner time. 

He takes my hand, and we walk back to the car together. And as I lift him up into his seat, I pull him close for a hug and whisper "Sammie Baby, it sure is a beautiful day."

Writer's Block: #33, #7, #17, #47.

I have writer's block. This always happens to me at around days 18-21 of my month long challenges. I sit, staring at my computer, with no idea what to write.

I took on this project, not to just write gibberish, but to actually force myself to connect with myself- mind and spirit, working together to sort out some of the information overload I've been facing lately. So I'm not interested in doing "just to write" posts. I want to write something meaningful everyday- or at least meaningful to me.

So, I tossed it out to the interwebz: Give me a number! (between 1 and 125)

And I got 33. And then 7. And then 17. And then 47. (lots of 7s there. Interesting).

So, for the next four days, I will use this list of 125 Blog Topics to guide my writing.

Wish me luck!

This is how we build an identity

If you had asked me two weeks ago "What is autism?", I doubt I could have put together much more than a pseudo-medical breakdown of its symptomology. It just wasn't a question I had asked myself very often- it was something I'd always accepted as "It just is."

And then this happened.

And then this.

So I wrote this.

And I read this.

And this.

And this.

And so many more stories that moved me. 

And, much to my surprise, a new part of me was born into a community that I never knew existed. Or rather, I knew that it was there- I just didn't know that I belonged there too.

Over the course of the day, my heart swelled with joy, my eyes filled with tears, my soul soared to the clouds.

These are my people.

This is my home.

Those with autism. Those who love them. Those who teach them. Those who nurture them. Those who advocate for them, and for themselves. Those who see a brighter future and a world full of acceptance and diversity.

They are me. And I am them. 

Today, I discovered a new part of my identity.

I suppose you never know who you are until someone attempts to mischaracterize you.

I was put here, in this time and in this place and I can choose how my life is spent.

I choose to spread love.

I choose to see hope.

I define myself by what can be.

I choose to do more than just "survive".

A huge thank you to the creators of the This Is Autism flashblog for bringing us together as one united voice for change. And a sly thank you to Suzanne Wright, of Autism Speaks, without whom none of this would have been possible (or necessary). 

On Neurodiversity: A poem

You say you oppose
Neurodiversity
As if- somehow-
The billions of unique personalities
On this planet
Are housed in our ankles and elbows
And not in
Our minds

Our brains flash at different intervals
Pulsing with different electricity
Who are you to say your wiring
Is superior to mine

Or to my son's?

Do only brains that look like yours
Enjoy a quality of life?
How do you begin to measure
Where the animal ends and the person begins?

You say I support
Neurodiversity
I ask you
As opposed to what?

My contribution to the "This is Autism" Flashblog

This blog post is my contribution to the This Is Autism flash blog. 

We read every label. 

We avoid foods that upset him. 

We supplement with nutrients, vitamins, minerals, secretly hidden in his juice boxes  

We stress about his diet. 

We worry about whether he will eat lunch. 

We bulk buy the half dozen foods that he enjoys, only to wonder why he won't eat them. 

We cover every food imaginable with peanut butter, in hopes that he will cave.

We avoid restaurants, knowing there will be nothing there he will tolerate. 

We rejoice in every new food he tries and reward him with praise and love. 

This is parenting Sammie. 

We follow a strict bedtime routine. 

We hope every night that he will follow it too. 

We watch him on the monitor, hoping that he will stay safe. 

We cringe every time he sighs and moves in his sleep. 

We settle the baby who woke up when he cried. 

We wonder why he can't seem to calm his body. 

We agonize over his exhaustion when sleep goes awry.

We struggle with whether or not we should use a sleep aid.  

We haven't had full night's sleep since he was born. 

We celebrate every time he sleeps through the night. 

This is parenting Sammie. 

We dim the lights. 

We monitor noise levels. 

We plan every outing, carefully scanning the environment for triggers.

We cut off tags and cautiously select fabrics. 

We wonder where his shoes and socks have gone. 

We built a dark, sensory room. 

We built a fun, gross motor room. 

We bought a trampoline, a swing set, a slide, an indoor hammock. 

We stock up on toys that he will never play with.

We hope he might change his mind. 

We wonder when our house became a jungle gym.

We follow a sensory diet, and regret when we get off track. 

We hold him when he breaks down because it's all become too much. 

We agonize over his meltdowns, and are filled with guilt and regret. 

We have gotten injured. 

We have watched him injure himself. 

We accommodate the needs of his body. 

This is parenting Sammie. 

We analyze every movement. 

We wonder if it is developmentally appropriate. 

We laugh when we watch him spin in the kitchen.

We feel exposed when he does it in the mall. 

We tell people that he speaks with his body. 

We reenforce that behaviour is communication. 

We offer alternatives to busy his hands. 

We know that we are judged. 

We want him to express his joy. 

We wish he could do it with words. 

We seek out people who "get us". 

We surround ourselves with people who get him. 

This is parenting Sammie. 

We seek out his eyes. 

We relish every look, every smile, every laugh. 

We constantly try to keep him engaged. 

We are overcome with guilt when we can't. 

We are thrilled that he has friends who love him. 

We know that we are very lucky. 

We worry that, soon, they won't understand. 

We are scared that they will abandon him. 

We are terrified that he will be lonely. 

We wonder what he is thinking. 

We wonder what he is feeling. 

We wonder what he would say, if only he could say it. 

We manage out expectations. 

We understand that the future is uncertain, for him and for us. 

This is parenting Sammie. 

We research GPS location devices. 

We have the police department programmed into our phones. 

We walk a fine line between over-parenting and allowing him to grow.

We want him to feel safe. 

We wish he understood fear. 

We know that water is his favourite friend. 

We know that water is our enemy. 

We know that he loves to explore. 

We lock all the doors. 

This is parenting Sammie. 

We feel his love in every hug and every kiss. 

We hear his love in every song. 

We believe that every word is a gift. 

We bear the responsibility of managing the world. 

We know he can not manage it without us. 

We seek out answers to mitigate his negative symptoms. 

We encourage him to explore and expand on his strengths. 

We count our pennies. 

We budget for unforeseen expenses. 

We see doctors, therapists, specialists, teachers. 

We are overwhelmed with information.

We juggle the needs of both of our children. 

We wonder if we are failing him. 

We wonder if we are failing her. 

We love our son for who he is. 

We do not try to change him. 

We try to understand him. 

We try to help him. 

We wonder if we are. 

This is parenting Sammie. 

We cherish every day.

We think he is the most interesting person in the world. 

We tickle him until he cries from laughter. 

We snuggle and watch Shawn the Train. 

We hold hands while walking down the street. 

We babble back and forth in the car. 

We stare adoringly as he plays with his sister. 

We cheer him on when he punches in karate. 

We love to take him swimming. 

We love to take him to the play gym. 

We love to take him everywhere. 

We read stories. 

We trip on trains. 

We shake our heads in amazement at everything he can do. 

We speak his language. 

We know that he understands ours. 

We hang his artwork on the fridge. 

We play peek-a-boo. 

We sing silly songs to him. 

We go along with his silly jokes. 

We are proud of him every day. 

We know that there is nothing he can't do. 

We look forward to the future. 

This is parenting Sammie. 

We cry. 

We celebrate. 

We analyze. 

We grow. 

We learn. 

We spread awareness. 

We support each other, and others like us.  

We struggle.  

We thrive. 

We do so much more than merely survive. 

This is parenting Sammie.

We can not tell you what Autism Is.

We are not Autistic.

We are the supporters, the cheerleaders, the co-advocates, the friends, and the family.

This is parenting Autism. 

Testing waters

Tomorrow, we go on our first overnight trip in almost a year. It used to not be a big deal- after all, what difference does it make where your kid sleeps, when he only sleeps a few hours a night regardless?

But now the game has changed. For the past few months, we have had Sam on a sleep routine that actually works for him and he sleeps, on average, 10-12 hours a night.  As you can imagine, this was a game changer for our family and the sleep has been the best change in the past year.  But, we are gun shy. The fear of regressing back into that world of sleeplessness hovers over us like a shadow, reminding us of the horror of genuine sleep deprivation.

So, tomorrow we test the waters. We are packing all the "safest" foods. We are bringing all the comfort objects. We are prepping ourselves psychologically, and picked a suite in a hotel with a pool to give him full gross motor and sensory exposure.

And we are fully prepared to pack up and head home in the middle of the night if this all proves to be the worst experiment of all time.

I am all kinds of nervous right now.

But I have to put my faith in my kiddo and his resilient, adaptable nature. And I have to remind myself that he always has an uncanny way of surprising me when I underestimate his ability to adjust to the unknown.

But, just to be sure, I'm also packing the melatonin. ;)

Jungles of the Mostly Unknown

There are a lot of cheerleader-style inspirational memes floating around the interwebz extolling thr virtues of the "autism parent".

Most of these make me smile and have even pushed me to persevere in rough times. But every so often, these happy messages cross a line with me because while the message may seem positive and empowering, sometimes they do so at the expense of empowering our children.

There are two main messages that I take issue with:

1) I am the only "expert" on my child/I am my child's best advocate types

And

2) I am my non-verbal child's "voice".

These are two ideas that, while altogether pleasant as far as catch phrases go, have deeper implications that concern me.

Why, you ask?

Because we would never make that claim about another human being that wasn't disabled.

I would never say: "I am the expert on my husband." This would imply that I know him better than he knows himself. It would also imply that I am omnisciently aware of his thoughts, opinions and beliefs- many of which he has not necessarily shared with me.

Don't get me wrong. I know my child. Really well. Way better than some doctor off the street who has seen him for an hour total.

But I only "know" what I am shown. No one has access to the inner mind and soul of another human being.

I know that Sammie is resistant to new foods. I know that this is often because of sensory issues like texture. But I also know that I make a lot of assumptions about what he experiences based on what I see.

Only Sammie knows what it is to be Sammie.

The only "expert" on my child is himself.

Likewise with being his "best advocate". I may well be the most well positioned to advocate on his behalf, but I am a poor substitute at best for what he could (and does!) accomplish as a self advocate.

Sammie knows what he needs. He just doesn't currently know how to put these needs into words and phrases that our social institutions understand. So he turns to me to act as his interpreter. And I do the best I can to translate his language into English (or more accurately into 'policy'). But, as is often the case with parents of non-verbal children, a lot of this winds up feeling a lot more like incovering some ancient lost language than it does like actual translation. I speak "Sammie" but it isn't my mother tongue.

Which leads me to my major beef:

I am NOT Sammie's voice.

As mysterious as his language may be, it is there. Sammie speaks, in a variety of ways, and his voice is very clear if you know how to listen.

To claim to be speak for someone else without having rhe ability to ask them a) for their permission and b) if your interpretation is correct strikes me as condescending and arrogant at best.

As "autism parents", we do ourselves no favours by pretending to have all the answers. Moreover, when our children hear these types of statements, what they are hearing is that who they are is only as important as who we think they are. We strip them of their individuality and sense of self determination, two of the most important qualities they have.

I have always thought, and will continue to think of myself as a tour guide, leading others through the wild safari that is Sammie's world. I have a road map, but it is still largely new terrain. It's a foreign land, and is sometimes scary, but it is always an exciting adventure into the "mostly unknown".

But he remains the King of his jungle.  ;)

(Mostly) Wordless Wednesday: The Most Beautiful Picture In The World

My son.

My daughter.

Together, in a picture.

Touching each other.

Loving each other.

Looking at me.

There are no words for what this picture means to me, but those who know us know how big a moment this was for Sammie, Charlie and I. <3

Adventures In IPPs

Kids who are in early education programs such as Sam's all get IPPs (Individual Program Plans).  These documents outline the child's individual strengths, areas of development, and goals for the academic year.

I'm pleased to say that, after a month of discussion, changes, accommodations and revisions, I am very pleased with the IPP that the teacher and school have outlined for him.

Our goals this year are as follows:

• By the end of the year, Sam will independently feed himself 3/4 bites with a utensil during lunch time.  (This is a big one for us too. Sam CAN self feed. But he doesn't. He is very food resistent, and when he does self-feed, he insists on using his hands. It has been the cause of much stress...and laundry). 
• By the end of the year, Sam will independently accomplish arrival/departure (pull off jacket and shoes on/off) routine with 70% success, with staff prompting. 
• By the end of the year, Samuel will improve his ability to interact positively and cooperatively with his peers with staff prompting 75% of the time. 
• By the end of the year, Samuel will show increased interest and attention by responding to a communication partner 5 times throughout the school day in a variety of natural contexts. (This includes using the PODD, sign language, words, eye contact, etc.)

Overall, I'm happy with the goals and looking forward to applying them at home as well. 

I just wish that they would add one more goal, for him and for all children:

• Samuel will show a genuine relish and love for life, and continue to be the joyful, well adjusted, talented and intelligent boy that he has always been almost all of the time.

Sometimes, it seems to me that we've forgotten that the real goal of all of this should not be the ability to comply and meet standards, but instead to ensure that each child feels loved, secure, and cherished so that they can learn to thrive in life above all of our wild expectations. 

The school can have their IPP, but I'm always going to keep that one goal at the very front of my mind. 

Everything else is semantics. 

Guest Post: Auntie Erie was taken by surprise

Tonight's post is my first guest post. I never anticipated or sought out guest posters since this blog has been more of a diary to me than anything else. But some stories are too big to be told second hand. They need to come from the source.

Erie has been a part of Sam's life literally since the hour I learned that his heart was beating. She has loved him, for who he is, since before he was born and he adores her.

Thank you, Erie, for sharing this special moment with us.

I've never been so grateful for a messy car. ;)

*******************************************

Today was a bit of a shocker from the start. I hadn't seen Sam since he started his new class. I knew he has been growing leaps and and bounds, I just couldn't fully appreciate it until I saw it. Today Sam was what I so eloquently referred to as "Instant Sam". Sam has always taken a little time to warm up to me. He is amazing and smiley and happy when he does, but the transition time is usually there. Today blew me out of the water. Today he was smiley right off the bat. He held my gaze (eye contact has never been an issue between us, but even my 6-year-old has problems holding my gaze for the full 5 seconds Sam did!) and smiled and giggled. We threw him in the snow, took dozens of pictures, and marvelled at how much he had developed in the last 4 weeks.

Nothing, however, could have prepared me for what happened next.

I took Sam's hand, and for the first time ever, he let me. He held onto it, looked up at me, and smiled. Sam is my buddy, but as I said before, it often takes him awhile to warm up to me. I took his hand and we walked back to the car.

As I lifted him into his his car seat, he twisted as if he was trying to look on the floor of the car. There was a pile of Sam's stuff - jacket, a lunch bag, and several toys. I remarked that he wanted to have a look, and he let me lift him back down to the ground so he could better inspect the pile.

Amongst everything were 3 discarded juice boxes, all empty. I paid little attention to these as I looked around to see if there was a beloved train or book nearby.

"What would you like, Sam?" I asked. I assumed Sam would grab what he wanted, or exclaim in frustration and his mom would offer up suggestions. What I did not expect was for Sam to lay a finger atop one of the empty boxes, and say (clear as day, I might add) "Juice".

The word still rings in my ears, 8 hours later. He did not grab one of the empty boxes, he did not get frustrated that I was taking my time looking for a toy, he did not go around to the other side of the car and get his mom. He gestured at the empty box, and said "juice".

I looked up at Zita in stunned silence. He did not mimic me (I hadn't said the word at all), and there wasn't a "was it/wasn't it" guessing game of the random sound he made. He answered my question in the clearest of manners. I could not get him the juice box fast enough.

Today was more than just giggles and smiles. Today was more than an "Instant Sam". Today was a glimpse into all that the future holds possible for this amazing boy.

Today Sam spoke.

Voodoo Podd: Finding Sammie's voice

So, as I mentioned, we introduced the PODD system to Sammie this week.

It's a big book. And heavy. And it has to go everywhere with him.

So we thought we'd spruce it up a bit.

Sammie is now one cool cat, rocking out his new PODD Guitar.

I used duct tape to give it some pizazz and rigged it up with a Jimi Hendrix "Voodoo Child" guitar strap so we can easily cart it around.

It took forever to make it look "just right", and I spent most of it feeling pretty discouraged by the enormity of having to find my way through this new tool. It is daunting to say the least.

But tonight, Jason used the PODD to ask Sammie if he was tired and wanted to go to bed. Slowly, and seemingly deliberately, Sammie tapped the image that Jason had pointed to.

"TIRED"

Maybe it was coincidence. Or maybe he was just mimicking (which in itself would be a HUGE step in the right direction.) 

But tonight, my kiddo- accidentally or not- clearly told me how he was feeling for the first time ever.

He's a little rockstar, and I know he'll be jammin' this thing in no time.

;)

I need some 'down time'

Life is busy.

Some would even say crazy.

And I love it. Truly. Every second.

But it is a go, go, go existence and tonight, I just need to

Stop.

Take a breathe.

Put my feet up.

Shirk responsibility for a night and enjoy the company of friends

Over a glass of wine

Or six

Who's counting anyway?

Not me.

You will get no words of wisdom from me tonight, save this:

Cherish your friends and the moments you spend with them.

They are the flashlights that guide you on your way to the light at the end of the tunnel.

Goodnight!

He notices her

Out of the corner of his eye, I see him steal a glance in her direction.

They are few and far between, but I notice.

I notice him, noticing her.

Adding a sibling into the mix has definitely been a lot for Sammie to take in.

His whole world got turned upside down, and we definitely had some growing pains. 

Cries of anger. Screams of resentment.

But, day by day, the outbursts of jealousy have started to fall by the wayside.

And, slowly but surely, his gaze has started to take her in.

I wonder what he thinks of her, this feminine mirror image of himself.  I wonder what he thinks when he sees her, adoring him and every move he makes. I wonder if he understands that he is, and always will be, her hero.

I wonder if he knows that she loves him.

I wonder if he has begun to understand that he loves her. 

That despite the chaos of this new world, she is exactly the sister and friend that he needs. 

I wonder if he wonders what she will be like when she grows up. Will she learn to speak? And if she speaks, what will she say? Will he understand? 

Will he respond?

There are still so many questions, but- more and more- the answers are creeping out.

Because he may not have noticed, but I saw him take her hand when she was crying in the car. 

And I saw him give her one of his trains to play with when she didn't have a toy of her own. 

And I saw him smile when she giggled, and smirk when she tried to crawl over him.

He may not have known it, but I saw it all.

I noticed him, noticing her.

Every time, better than the last.

Every time, a dream come true.

(Sammie meets his sister Charlie for the first time, February 20th, 2013.)

Meet the new addition: THE PODD

It's been a busy day at Casa Dulock. Today, we were introduced to the newest member of our family: The PODD, or the "Pragmatic Organization Dynamic Display Communication Book".

What is a PODD you ask? Well, in simple terms, it is a low-tech communication device which will allow me to model visually the use of language for Sammie, with a long term goal of him being able to use the book to communicate his own thoughts, wants, needs, and desires.

It's a pretty exciting tool, but a lot to wrap my head around.

The concept is simple- We build phrases in structured parts, using specific images and phrases, within the context of a conversation. I use the PODD as a modelling device, with an emphasis on my own thoughts and feelings, and encourage Sammie to the do same to express himself.

It has about 50 pages, each identified by various categories and labels. Each page has 9 main symbols, and a series of sub-symbols such as "turn the page" or "oops" for when you have navigated to the wrong page accidentally.

Each PODD is individualized to the child's needs, interests, tastes, activities, etc. This allows for great precision when it comes to communicating wants, needs, likes and dislikes.

Here's a short video showing the PODD in action.

Where some symbol-based communication systems are based solely in selecting images, the PODD combines imagines/pictures with voice/sign prompts to create an entire concept.  It isn't enough to show a picture of a dog. That, in itself, doesn't actually convey anything more than "this is a dog."  With the PODD, you would also indicate that you have "something to say" about the "dog". You could then identify if you have a question or a comment, and whether you want to pet the dog or whether it frightens you. It is driven by the guiding principle of vocabulary, beyond just the simple use of words, and can be as simple or as intricate as the situation dictates.

It is intuitive, comprehensive and awesome.

And, right now, it's also totally overwhelming.

You see, there's going to be a serious learning curve with this one, and that's hard for me to accept. I have been waiting so long for actual practical tools that I want to be able to dive into it head first and nail the landing on the first attempt.

But that's not how these things work. I have to learn it before I can teach it.

So apparently my weekend plans have now become spoken for. I'm going to be spending a lot of time getting acquainted with my new friend PODD and finding simple ways to start integrating the model into our every day lives. I will also have to manage my expectations carefully to give Sammie a long time to adjust to this model before expecting him to pick up on it overnight. I suspect that will be a struggle for me, as patience is not a virtue I'm particularly known for. ;)

So I will read. And I will practice. And I will annoy my friends by using them as PODD practice guinea pigs.

But first, I'm probably going to start by creating a strap for it so that I can wear it around, because this thing is HEAVY!

So, PODD, welcome to the Dulock family. I know we're going to become fast friends.

How do I do it?

Of all the things I hear all the time that really drives me batty, "I don't know how you DO it" is pretty high up there on the top of the list.

I mean, really.

You say this as if there is some sort of "opt out" option when it comes to parenting. Like God has a customer service counter where you can bring back your defective child and say "I'd like to upgrade to a better operating system. Do you have this in a blonde?".

Come on, people. It doesn't work that way.

"How do I do it?"

I just "do".

I "do" it because my kids are my everything, and I would "do" anything for them. I don't parent an "autistic child" or a "neurotypical one"- I parent Sammie and Charlie, my flesh and blood, perfect exactly as they are.

Is it easy? Nope. Parenting seldom is. But is it worth it? More than words can say.

Sometimes, I am running on fumes. Between school, meetings, therapies, IEPs, research, doctors appointments, and- you know- parenting another child, the days are often long and sometimes difficult.

We navigate a complex diet, massive sensory issues, and a couple of strong and persistent personalities, and we just try to do our best.

99% of the time, we do.

We survive.

Most of the time, we even thrive.

But we don't "do" it because of some deep seeded, altruistic motive. We do it because there just aren't any options.

Parenting has an automatic no refunds or returns policy.

And you don't know what you're going to get.

In the blink of an eye, everything can change all at once, and your expectations get smushed into the ground.

So you make up new dreams, and you create a new reality.

Because their bright, smiling faces make it all worthwhile. In fact, it makes you forget that you ever thought you wanted something different to begin with. 

"How do I do it?" is the wrong question.

The real question is this:

"How could I not?"

I earned this life

On the heels of an exceptionally trying day, I wake up and slowly start to put back together the pieces of my shaken spirit. I say my prayers, kiss my husband, bid good morning to my children (while striving not to silently curse them for waking up so early). I combed the interwebz for my morning laughs, go over work emails, review my scheduled events and plan out my course of action.  One step at a time, I launch myself back into the world.

I'd like to say I'm ready to "take it on" and that I washed all the ugliness of yesterday down the drain with my final shampoo rinse, but I'd be lying. Yesterday still lingers over me like a shadow, a cold reminder of the fact that hard days are still ahead.

But I have released myself of the self-piteous, emotionally distraught state I found myself in last night, and I think that's a start.

Sometimes, on the hard days, it can be difficult to remember that this is the life I deserve.

I earned it.

I merited it.

This struggle, these challenges, this frustration.

I asked for it. Or it asked for me. I don't know. And I'm not entirely sure it matters.

I earned it when the surgeon told me at 15 that I had significant scar tissue and internal trauma that would forever complicate my chances for pregnancy.  

I earned it when my oncologist told me that cancer survivors don't have babies- that our eggs and bodies just seem to never be fully able to recover from the barrage of treatments that it takes to keep one alive.

I earned it when I sat, covered in tears and blood, collapsed on the floor of my washroom, mourning the loss of life that I had once held inside me.

9 miscarriages.

2 children.

You're damn right I earned this.

Becoming a parent was not something that was supposed to be "in the cards" for me. Each of my pregnancies carried with it a formidable risk of complication, with both of my births landing me in the hospital and resulting in emergency procedures to keep the babies and I safe.

It wasn't something my body was meant to do.

But it was something my spirit was meant to do.

Compelled, even- if you want to get poetic.

Call it what you will:

A miracle of science. Fate. Providence. Divine Intervention. Karma. Coincidence.

You have your words, and I have mine.

Vocation.

This is the life that I was summoned to lead.

Despite all challenges. Despite all struggles. Despite all odds.

I chose to take it on, as a challenge and as a mission, because I know no other way to live.

I am, and have somehow always been, a mother.

I have often been asked: "If you knew your child would be born with Autism, would you still have had him."

What these people don't know is that, on some level, I always knew. I have been talking all my adult life about adopting a special needs child (believing, of course, that I could never have a child of my own).  During my pregnancy, I was told that there were "abnormalities" and given the option to terminate because the risk for life-long complications was very high.

And yes, he is complicated. And yes, he probably always will be. But I learned to live when I gave birth to my handsome son, and again to my beautiful daughter.

Where once was lost, I now am found; was blind, but now I see. 

I was born again, as a parent.

I worked hard for this life, knowing full well what it entailed.

For better and for worse, I earned it.

And I wouldn't change a thing.

Head. Smash. Keyboard.

I don't have much to say today. It's been an ugly one in my little corner of the world. I'm cranky, tired, and frustrated with so many things right now that it's all I can do to not scream. But of course, we never scream...or we might wake the kids. Which would literally be the worst thing ever.

They say that if you can't say anything nice,  you shouldn't say anything at all. I've always believed that bloggers should follow this advice in general, so I'm setting the gold standard for that practice tonight.

Today was the suck. But tomorrow will be awesome.

Dammit. 

Language and the pictures we paint

Shakespeare told us that "A rose, by any other name, would smell as sweet".  

And while it is true that, in spite what you name it, a rose would retain its essential characteristics regardless, modern psychology has confirmed time and time again that our impressions of that rose would be highly subject to influence by the words that we use to describe it. 

The fact is that words, and how we use them, are incredible tools for influencing perception, understanding, and social definition. How an item, situation, or person, is described unquestionably impacts the idea we have of them. 

Fog, in the context of a horror story, is terrifying. But strolling through a foggy morning with the one you love creates a picture of romance and peacefulness. 

In both cases, the fog stays the same. But the impression surrounding it changes dramatically. 

I've been giving a lot of thought lately on language, particularly when it comes to describing my child. Being the parent of a minimally-verbal three year old forces me to often have to speak "of him" and "on his behalf". Often- almost always, even- I have to do this in his presence. 

Sometimes, I am speaking to his school friends or peers at a playground. Other times, I am describing him to our friends and family members. And, lately, I've frequently had to do it to professionals- doctors, therapists, teachers, aides- all of whom have varying degrees of first hand experience with my son. 

And all too often, these conversations revolve around one key topic: Sammie's development, aka: Autism (or something like it, as it should be noted that Sammie is still officially undiagnosed).

It is an incredibly odd thing to have to speak on someone else's behalf. I am not in my son's mind. I have nothing but his non-verbal language, body and behaviour cues to guide me. At best, I am only guessing as to what he is thinking and feeling. Often, these guesses are shown to be relatively accurate. But sometimes, I wonder how much of my own mind I am projecting onto his. 

In any case, I know from my background in sociology that the words that I choose to describe Sammie will create lasting impressions on those to whom I describe him. This can, and often does, impact their interactions with him in ways that, consequently, lead him to react in kind. This is known as labeling theory.  We internalize the labels that are ascribed to us and these lead us to acting in ways that fulfill these labels, like a psychological self-fulfilling prophecy. 

Jason and I chose to parent our children with one central philosophy at the heart of it all: Our children are human beings, from birth, with wants, needs, feelings, and opinions of their own that merit respect and consideration. This has led us to parent with practices that are often lumped under titles like "Attachment Parenting", "Peaceful Parenting", "Evolutionary Parenting", "Permissive Parenting" and so on. 

In truth, we've never really related to any of these terms. We didn't choose our parenting tactics out of a book. We have always simply sought to identify the need that our child had, and meet these in a way that is respectful of them. More than any other term, we have related to the concept of "collaboration"- working together to find the solution that meets everyone's needs

In our quest to parent with respect and consideration, we have committed (as often as we can, as we all slip up once in a while) to adopting language that is either a) neutral or b) positive when we speak of our kids. We do this when they are present, and we do it when they are not (more out of habit than anything).  So, for example, instead of saying our child is having a "bad" day, we talk about them being "sensitive", "off", "tired", "dis-regulated", "overwhelmed", etc. These descriptors, aside from being more accurate, remove the negative connotations associated with "bad" behaviour. 

It has worked for us. We find that, for the most part, when others speak about Sammie they tend to use the same language that we have modelled and focus on the positive aspects of his behaviour.  

Curious to know what other parents thought about the impact of language on their kids, I tossed the question out to the interwebs on two different forums, one for parents of children with Autism and another for parents of children with diverse and complex exceptional needs. The answers that I got were interesting, and generally consistent with my own point of view on the subject. However, one person's reaction definitely made me pause to think. 

She wrote: "I think it is a fine balance. I also need to vent about the things that make my son more difficult because if I keep it in I will explode. I would never vent in front of him, but to my husband, friends, and you guys well... I also need the world to see that my son has both challenges ( that require extra supports) and strengths (limitless potential). If the government investes in our kids they will get productive members of society (taxpayers) rather than lifelong dependents."

She definitely brought up a few interesting points: 1) that negative language can be therapeutic, as a form of release and can be properly utilized in appropriate contexts, and 2) that, when we choose our language, we need to also remember to paint an accurate picture of the challenges that are faced. 

Another poster gave an even more raw and incredibly human response: "I still haven't mastered positive language. It's a trend in all my life. I feel like part of me needs others to acknowledge how hard things are for me."

Another point to consider. If we use positive language, do we somehow create a situation where we are minimizing the struggles that we face, and therefore creating an unrealistic impression of our challenges and lived realities?

On many levels, I can relate to these posters. I have definitely struggled with family members telling me that it's "not that bad" because I have chosen words carefully in order to ensure that they do not judge or misrepresent my son. I have even been accused of "sugar coating" things, or of only talking about the "hard times" when it is convenient for me. 

But on the other hand, I have a child to consider, and the weight of being his only voice in a world where spoken language is deemed to be the only valid form of communication bears down on me. Sammie has no control over what I say, and therefore has only minimal control over how he is perceived. What I say matters a great deal to him. 

I think the first poster is right when she says it is a fine balance, and I have come to the conclusion that there is, in fact, a way to blend the two and to walk the fine line between presenting the cold hard facts, while not labelling the child and impacting the perceptions of who he is. This comes down to something I was taught in grade school: Using "I" language.

When I am asked to describe the challenges and difficulties that are present in our lives, I am actually not speaking only on Sammie's behalf. At that point, I am speaking of my own lived experiences as well, and on the impact that these have on my own life. By refocusing my language towards the "I", I am shifting the focal point away from him and onto myself. 

For example: 

"Sammie had a bad day. He kept melting down and wouldn't calm down no matter what I tried. He hit me in the face, and can not be controlled when he is like this" 

can very easily become 

"Sammie and I really struggled today. I wasn't able to help him through his meltdown no matter what I tried. I wound up getting hurt trying to help him control his body and emotions. We need more supports to learn how to get through these challenging times together."

By utilizing "I" and "We", and rethinking some of the context ("I wound up getting hurt" instead of "He hit me"), we shift the negative impact away from the child and onto the situation. We still clearly outline the challenges and accurately describe the situation, but do so in a way that is more solution focused, pro-active and respectful of the impact that negative words can have on our child and those who work with them. 

I fully admit, these are still very preliminary thoughts on an aspect of the topic that I hadn't fully considered before today.  I would love to hear some feedback from others on how they navigate the fine lines.

Do you find venting negativity, unhindered, to be therapeutic? 

Do you worry about how it will impact how others treat/view your kids? 

How do you draw the line between telling the "ugly truth", and keeping things positive and optimistic?

I leave you to ponder ;)

Goodnight, 

Mama Dulock  

We Do Not Suffer...

As I've written before, I'm pretty tolerant of people's ignorance regarding Autism and special needs in general. Ignorance is generally rooted in a lack of exposure, and not usually in malicious and purposeful obtuseness (though, I admit, that the latter does exist). Most people are not deliberately unkind, inconsiderate, or judgmental.  They simply lack knowledge, information and guidance on what they should do in the face of a situation that is unfamiliar to them. They react on base instinct alone, and that's all that we can expect of people who don't have much else to go on.

And, unfortunately, a lot of "information" out there isn't exactly what I would consider to be the most accurate representation of life on the Spectrum.

But everyone's got their thing. Their pet peeve, if you will. The one thing that they can not, and will not accept as being part of their life. And while they can ignore other things, when that one thing creeps up, it can't be ignored.

The ever-awesome Jillsmo, of yeahgoodtimes.blogspot.com, tweeted the following last week:

Yup, she pretty much nails it! That is definitely one of my biggest pet peeves.

But even then, I can forgive ignorance, trying to remember that- once upon a time, less than 20 years ago- "retard" was a completely socially acceptable term and is still even deemed to be the most accurate medical term for some cognitive impairments. There are many that haven't yet caught up to the rest of society that understands that this term, and all the connotations that accompany it, are better left in the past.

But I understand her frustration. It's her thing. I get it.

I have a thing of my own.

So, to paraphrase Jillsmo:

"You want to know how to get me to unfollow/unfriend/un-'know' you? Of course you do! Just refer to my kiddo as "suffering" from Autism in any context. Kthnxbye."

You see, there are few pills in life harder to swallow than for someone to tell me that my bright, smiley, sunshine-filled, fun-loving, charming, caring and affectionate kid is "suffering" because of how his brain works.

Nope, that dog don't bark here.

Yes, Sammie has a genetic (arguably epigenetic) neurological difference that leads to his brain processing information differently than those of with typical neurology.

Yes, that has created challenges for him to learning how to communicate and socialize with others in ways that are deemed socially acceptable.

Yes, he sometimes gets frustrated by these obstacles. Sometimes that frustration turns into tantrums. Sometimes (rarely), it even turns into meltdowns.

But let me make one thing very, very clear: WE DO NOT SUFFER. 

Let's look at that word, "suffering" shall we?

To "suffer" is defined by Merriam-Webster as:

suf·fer

 verb \ˈsə-fər\

: to experience pain, illness, or injury

: to experience something unpleasant (such as defeat, loss, or damage)

: to become worse because of being badly affected by something

So yes, in that context, I am sure that there are moments in Sammie's life, like in all our lives, where he is "suffering".  But that is not what is implied when one says that Sammie "suffers" from Autism. People aren't commenting on the occasional moments in life where Sammie might fall, hit his head and 'suffer' pain. Nope. They are commenting on his existence, as a whole.

They believe that to be Autistic is to suffer.

And that's just not a belief that I can accept as being a part of my world, particularly not from anyone who has any first, second or even third hand knowledge of my kid and his life.

Those who know Sammie will tell you that he spends about 90% of his time smiling. Sometimes, he smiles at people. Other times, he smiles at things. And often, he smiles at the world in general, as if he is in deep psychic conversation with Mother Earth.

He laughs ALL. THE. TIME. Sometimes they come in small giggles, and other times huge explosions of hearty chuckles. But laughing is a huge part of his special language, and he loves to share his happiness with the world.

Sammie may not speak, but he can sing. He hums almost the entire day. Some of the songs are made up, others are almost spot-on renditions of his favourites like "twinkle twinkle" or "three blind mice".

Sammie seeks hugs, kisses, tickles and other forms of affection. When he really wants to know that you are paying attention, he looks deeply into your eyes, seeking out your reaction and ensuring a lasting connection.  Granted, eye contact doesn't happen as frequently with him as with other kids...but in a way, that is a gift. I have learned to appreciate his eyes and cherish every gaze. I'm not sure I've ever understood eye contact as "connection" before Sammie.

Again, yes- He gets frustrated by the fact that he functions differently from other kids.  That's pretty typical actually.  We all get frustrated by differences in our skills, abilities, and personalities.  We want to be able to do things that others can do, and often don't understand why we can't.  This is a part of being human. It is a vital aspect of our personal growth. But it is not suffering.

And, yes- sometimes, he has tantrums. He's 3. That might actually be the most neuro-typical thing about him.

And finally- ok: Every so often, those turn into meltdowns. In Sammie's case, these are exceptionally rare (a luxury that I know is not shared by every family with special needs kids).  When they happen, they are intense, and they are frightening. Sometimes, they are dangerous. There are few things in life worse than watching your child become physically, psychologically, emotionally and spiritually overcome by the world around him, to the point of not being able to control his mind or his body.

Those moments are terrible.

And in those moments, there is suffering.

For him. And for all of us.

But these are NOT the moments that define him.

And they are NOT the moments that define our lives.

Sammie is defined by the smiles, the laughter, the joy. He is defined by the intelligence, the sense of humour, the inquisitive nature. He is defined by his persistence, his memory, his perceptiveness. He is defined by his interests, his likes, his dislikes, his fears, his ambitions, his hopes and his dreams.

Without words, he tells us daily the story of who he is. And it is a wonderful story about an amazing little boy, who loves his life and loves himself for who he is.

We do not suffer.

Don't believe me?

Pictures tell a thousand words. Does this face look like the face of a kid in a perpetual state of suffering?

No???

I didn't think so. So don't ascribe to him a life of pain just because you have a hard time understanding that he likes himself for who he is, even if that doesn't suit your definition of what is "normal".

Different is not suffering.

kthanxbye ;)

With love,
Mama Dulock

PS: Just in case those around me need a reminder, THIS is my son. And his voice is full of happiness.